Last week I got some bad news about Faith. She failed a test that is critically important when looking at the recovery of her disease. When the doctor from Cincinnati called to explain it to me, I felt like someone sucked all the air out of my lungs. This entire time we had been dealing with this, I had aways thought that someday Faith would be better, with the exception of a missing colon and some nasty scars. I thought we would live this terrible year and she would be on the mend. I had always maintained that my daughter would fully recover from this yuck and we would be back on track in a year or two. Suddenly, that doesn’t seems to be the case. This road trip seems to have just gotten longer.
I don’t have much to say to anyone. Everyone keeps asking how I am. In the last two years, I lost my dad to a very unexpected death, I got divorced, I lost my income source and my ability to support myself and my family. Thru all that loss…I had a lot to say. I could tell stories about my dad, I could complain about the divorce, and I could lecture everyone on how one minute you can have it all and the next wonder if you will lose your car or your house.
Now, its different. When people ask me how I am I have nothing to say, I avoid the conversations, I avoid everyone. Everyone one asks are you okay? I am not sure how to answer, then sometimes when you do, they say things like….well it could be worse or she will be fine. Someone once told me, I bet there are parents that would trade places with you, they’ve got it worse. It’s easier to avoid these conversations. Because when you are in a situation like this, when someone says the wrong thing…you remember.
I have a friend who sends me messages via twitter and he usually asks me the same thing…you staying strong?? It’s my favorite question, because I can say YES. Because thru all of this, it is the one thing I can be positive about, I am staying strong, on the outside anyway. I may burst into tears the minute I am alone, and I may lay awake at night worrying about how we will ever get thru this mess…but I am doing this. I wake-up every day. I take care of my daughter and my son. and I am a great mom, a great single mom. Just don’t ask me if I am okay. Because I’m not. If you want to ask how we are its simple…you staying strong? Yes, I am staying strong. Right now, that’s all I’ve got.
In April Faith had an NG tube placed in her nose for tube feeds. Because her digestive system doesn’t work, and hasn’t worked ever in her five years she doesn’t eat nearly what a child her age should be eating. The solution to this tube feeds. She has an IV pole at home and she wears a backpack when she goes out of the house. The issue of course was the tube that was always taped to her face. When ever anyone would try to take her picture she would cover her tube up with her hand. The tube really bothered her.
The surgeons soon decided it was a long-term problem and admitted Faith for an insertion of an G-tube, a more permanent tube that goes directly into her belly. She was ecstatic! She said, “now I will look like a normal kid.” She told everyone, “I’m getting my tube out of my nose, everyone with think I am a normal kid now.” The response of just about everyone…”Faith you are a normal kid already.” I am sure it seems wise to respond in this fashion as an adult. I am sure it seems that’s what she would want to hear. I am also very sure as adults we see things very differently.
At five, she is the wise one. She is not normal. This is not normal, it is our normal, but it is by no means what a healthy five-year old kid is doing. She gets her nutrition thru a tube that is inserted into her belly. That nutrition is a formula that comes in a can and is carried around with her all the time. Part of her colon is in a bag on the outside of her body. She takes medicines around the clock, we do colon washes twice a day, her ostomy bag has to be changed, her stoma has to be cleaned, her g-tube has to be flushed, her incisions have to be cleaned.
We’ve converted part of my bedroom into a treatment room. I have to time her colon washes around when I have another adult, who is on Faith’s pre-approved allowed to see my colon list, available to hold her hand. She needs that person, because even though we do that procedure 2x everyday, sticking a rubber tube into your colon and washing it out is a very scary thing. She has to pee on a schedule, because her bladder is so enlarged from this disease she can carry around massive amounts of waste in her bladder with no clue at all its there. We have to keep track of everything she eats, every calorie, so we know how fast we need to run her feeds so she gets the amount of calories she needs.
The worst part is the pain, and the pain control. She wakes up every night crying that her tummy hurts and I have to turn off her feeds. I give her pain medicine and I hold her up in bed until she falls back to sleep, sometimes it takes a couple of hours. She often wakes up an hour later crying in pain again. On a rare occasion she sleeps thru the night. Those nights are the scariest for me, I wake-up in an absolute panic thinking something horrible must have happened while I was asleep. I run to her room to feel her stomach and make sure she is still breathing.
None of this is normal. This isn’t what normal five-year olds are dealing with. Recently, we went out on my friends boat. He drives really fast, and the wind blows, and the water splashes up on to the boat it’s too loud to talk, or to even think. When we got back into the car Faith said to me, “Mom, I loved when we were going really fast on Gary’s boat. I felt totally normal kid and forgot I was sick.” Funny thing about that was, I had too.
So in the midst of all this chaos I have to look for things that help us to forget what our reality is right now. Because sometimes its nice just to feel like a normal kid.
If you ever have the opportunity to walk around a children’s hospital and just observe whats happening around you, I think it’s a great idea. It does one thing for certain, it puts life into perspective. It makes you realize what you have to be thankful for and just how precious life is.
Listen to the conversations the parents are having, they’re talking about their children. They’re talking about when they get to go home, they’re talking about the rock star doctors that are saving the lives of their children. They’re talking about the nurses who seemingly love the children as if they are their own. The conversations are heavy and full of drama. Real life drama. They are comforting. As if your pain hurts a little less, because someone else is going thru it.
Whats even more inspiring is to listen to the conversations the kids are having. I often have to walk away from them talking because the conversations are so real, and painful that I am unable to stop the tears from falling from my eyes. They feel normal around each other, and I understand that feeling. I feel normal talking to their parents as well. Today Faith talked to an eight year old boy named AJ, a heart patient from Nebraska. They were exchanging their stats, how many trips to the OR, how many pumps they’re on, what meds, how long they’ve been NPO (noting by mouth),how many specialists they see, their doctors names, etc. When Faith looked at me and said, “Mom, whats my nephrologist name?” She was trying to get his name because AJ had kidney pain and his doctor didn’t believe him. Faith is 5. A five-year old shouldn’t be able to refer her 8-year-old friend to a doctor. But these kids can they all can.
Sometimes, I get really mad. I believe Faith has been admitted to the hospital 7 times this year. It seems like we are here all the time. Our life is interrupted. I can’t work, and take care of things I need to take care of. Things are falling apart. You lose touch with everyone, because your normal relationships are gone. It’s so frustrating. So, I too occasionally have to take a walk to gain perspective…one trip to the oncology floor, knocks me back into shape. There are kids up there who have been here a year, some even longer.
The recovery from this most recent surgery won’t be fast. She needs to start tolerating her feeds, and gaining weight. She has a long way to go, and once she gets there we have to go to Cincinnati. We may have to stay there for a while. This is a long, long road. Her surgeon told us at the beginning of all this, it would be. When I was little I hated long car rides, I would ask my parents all the time…are we there yet? My dad never answered, only my mom would…almost, Mary Ann. This seems like the longest, worst road trip, I’ve ever been on. My dad died last year, so now I just ask him….Dad are we there yet? Just for this one time I am certain he wishes he could answer.
We take lots of things in life for granted, all of us do, well most of us. Things like having a car, having a job, having money in the bank, having food on the table, but most of us are aware of the fact that we take these things for granted. There is one thing that I can guarantee that everyone takes for granted, Pooping. Never before I had Faith did I realize what a huge deal pooping is. But it is a huge deal and if its something that you can do, without fail, well that is one more thing I think you should be thankful for.
Faith can’t poop. She hasnt been able to since birth. We’ve given her enemas and laxatives since she was a month old. Her doctors tried manual disimpactions (yep, it’s as awful as it sounds), the strongest laxatives, and enemas every day at home…nothing worked. In Feb 2011 we came to the University of Michigan. Faiths X-ray showed her entire colon and rectum impacted with stool. Her colon was enlarged into something they called mega-colon. Her bladder was the size of a pregnant adult womans, her kidney function was poor, and her blood work was bad. Turns out Faiths colon doesnt have the nerves it needs to move stool through the colon and out of the body. That problem, not being able to poop, has caused a bunch of other things to go wrong in Faiths body.
The immediate solution to this problem, a colostomy. I remember the day Dr. Newman told me this was the only way we could keep Faith healthy. Her colon was going to be outside of her body? She was going to poop into a bag? I dont cry easy, but I burst into tears right in front of Faith. She went in for the surgery the next day.
Things since then, things haven’t gone as planned. Infections, a prolapsed stoma, failure to thrive (meaning she can’t gain weight),and she gets sick. Sick to the point that I get really scared. Everyone asks me if shes going to be okay? I answer yes, someday. I believe that. For now, we have to take this day by day. When people say how is Faith, I have no clue how to answer. She isn’t good. She isn’t doing the things she should be. I have no clue if she’ll be able to start kindergarten in the fall. It’s not an easy question to answer.
What I do know is she is strong. She handles all of this with courage and grace. She worries more about her roommates that are no where near as sick as she is than she worries about herself. She inspires me to be thankful in the face of absolute chaos and a life that is falling apart around me. And, she loves me, to spite the fact that I can’t fix this. To spite the fact that she is in pain everyday, and I can’t make the pain go away. She loves me more because of all of this, which is amazing, because you would think, at 5 you would loose trust when your mom can’t make you feel better.
What’s also amazing is I don’t feel like less of a mom. The hardest part is that I can’t make her feel better or tell her when she’s going to feel better. And I really miss my son, so much that I have to keep that far from my mind, we’re in the hospital and away from him way too much. They deserve a break, they need one, we all do. On our way to the hospital this time Faith says, “Mom, we should be going to the beach, its summer. It’s the 4th of July. We shouldn’t be going to the hospital.” She’s right.
Everyday, I tell someone who I’m working on a blog. Yeah..seems funny, not at all my style…but necessary to update people of Faith status. Well, everyday has turned into months…Some shrink out there would say something like I’m avoiding talking about it because it’s too painful..very true. I’ve realized whats worse is that I am no longer connected with my people because of this…its been two god awful years and Miss. Optomistism has changed. My glass…is empty and I think that the people who loved me before all of this have a very hard time understanding who I’ve become. I am hoping that through this blog I can speak about my little Faith, so every time I see someone I don’t have to run the other way because I don’t want to explain to one more person how scared I am, so you will know where we are. So when I see you I can tell you a story about my mom who called 911 because she thought she saw the Dexter Bear, and not that were headed back to Mott in the morning.
I’m not a writer, I’m a talker…so this will be no literary prize…but a conversation about our life and where we are headed. But mostly, about my faith and her journey from ostomy bags and feeding tubes to tulips and fireflies.